Perceptions, experiences and needs of patients with idiopathic pulmonary fibrosis

• DOI: 10.1111/jan.12587
• Publication Date: 2014-12-23T07:34:14Z
• Authors: Annette Duck; Lisa G. Spencer; Simon Bailey; Colm Leonard; Jennifer Ormes; Ann‐Louise Caress
• Keywords: Multidisciplinary team

Abstract Aims To understand the perceptions, needs and experiences of patients with Idiopathic Pulmonary Fibrosis. Background pulmonary fibrosis is a progressive interstitial lung disease, mean life expectancy similar to some forms cancer 2–4 years from diagnosis. Unlike literature, which rich studies exploring their disease group, few publications exist on patient this severe fibrotic disease. Design A Qualitative study took place between 2007–2012. Methods Seventeen multidisciplinary team confirmed diagnosis Fibrosis, moderate advanced severity six informal carers were interviewed. An interview topic guide was developed by researchers service user group. The interviews audio‐recorded, semi‐structured at regional respiratory transplant centre in North West England. Interviews transcribed verbatim data analysed using Framework Analysis. Findings Three main themes identified: ‘Struggling get diagnosis’; ‘Loss I previously had’; ‘Living Fibrosis’. Patients reported struggling coping life‐limiting, rapidly illness no good treatment support structures. Conclusions There an urgent need for better understanding difficulties faced people Fibrosis carers. This can be used develop supportive care United Kingdom ultimately improve quality these patients.